In speaking of long term illness, there is a lot of talk about good days and bad days. It’s been just about seven months now since I spiked a high fever and everything changed. In that time, I have had some very, very bad days. I have had some good ones. I have definitely gone places, seen people, laughed, had fun, and for some moments even forgotten about being sick. I have covered my illness with cosmetics and bursts of energy that I summon up from either sheer force of will, or stubborn determination to just feel good for one goddamn second. But there is a limit.
Within the community of people with invisible illnesses, the idea of Spoon Theory has caught on. It is a simple and powerful explanation of what it’s like to live with an invisible or chronic illness. The idea is that each day when you wake up, you have a certain number of spoons. Each activity you complete during the day uses up some spoons. So, maybe you start your day with 10 spoons. Some days, simply getting out of bed, getting showered, and dressed will use up 3 spoons. Then it’ll take 5 to go to the grocery store to pick up a few things you’re out of and carry them into the house. 2 more spoons to make yourself some lunch before you collapse onto the couch, and you’re out of spoons before the day is half over. It’s a nice concrete way to explain how, with an illness like Lyme Disease, you just run out of gas.
I feel like Lymerella sometimes. The Fairy Godmother’s magic only lasts so long before I turn into a pumpkin…or perhaps a lime would be more apropos?
I have had some very good days recently. One day, I taught my music class in the morning, and then had the energy to go to the grocery store (which is already impressive). Once at the store, focusing on the things I absolutely needed, assuming my energy wouldn’t hold for long, I realized I still felt pretty darn good, and kept going. I filled my cart! I don’t remember the last time I was in a grocery store for that long and didn’t feel like I might black out out by the time I got to the register. I even managed to get half of the groceries into the house before I really started to feel tired. I had to spend the next couple of hours in bed in order to be ready to pick my son up from school that afternoon, but it was really a banner day. I had a nice afternoon with my little guy, and felt pretty good about myself.
Tick…tock… My Lymerella clock struck midnight at about 7:30. I felt the piercing pain in my head, the right side of my face pulling down, and my right arm and leg ached with a strong persistence. My wife came home from work and I could hardly manage two-word almost-sentences to let her know that I really had a good day, but it was OVER, and good night, we’ll talk in the morning.
The last several days have been mostly okay days – not really good, not really bad, but they have something in common. Each day has a finite number of spoons to use. Each day, that Lymerella clock will strike midnight. And day to day, I don’t know how many spoons I’ve got in my pocket, or how fast the clock is running out.